I was going to write about something completely different today but I am going to allow it to simmer a bit. I think it needs more time and space mentally as well as physically on the page.

Also, I have school starting this week. I am still signed up for two classes and deciding on which one after I take the first class, and then will drop. I am not “gearing up,” I am trying to build my own internal momentum or so I hope.

Remember in my last blog with the horrible death and dying CF book. A year or two later I came upon a much more enlightening book called, Cystic Fibrosis A Guide for Patient and Family, written by Dr. David M Orenstein with many contributors who still practices I believe in Philadelphia, 384 pages in length. The book is still in print.

He tells the facts with deliberation. He wants you to understand the facts, and some are hard to take in. But then he writes:

“Most often when CF patients are admitted to the hospital for treatment of a pulmonary exacerbation, they are not terribly sick or disabled. The reason for these hospitalizations is to keep someone relatively well, and not to cure someone who is dreadfully ill. Some people including young doctors, may not understand that and may even say, ‘You don’t look sick enough to be in the hospital.’ – I have gotten this in many appointments and hospitalizations.   

“They miss the point that your health is suffering and that the reasons for the hospitalization is to get you back to your normal state of good health. While you probably won’t be so sick that you need to be in bed all day, it is important to remember that you are in the hospital to improve your present and future health” (124).

Good health. I love these words.

He writes about life, and the wellness of life. “You should wear regular clothes” in the hospital. I wear my own loose fitting regular clothes every day in the hospital. I have had nurses and nursing assistants say, “You look like you are going to go on a run.” Maybe I would if I didn’t have this IV pole connected to me.

And since exercise is life for CFers, physical therapy comes in the next day and begins to talk about your exercise program or routine while in the hospital. That one was really tough this last go around. Reminding them I did not feel well.

He has a subject line and then outlines “The Cast of Characters” you shall meet in the hospital. He is funny.

He focuses on school, college, sports and exercise, friends, travel, marriage – life. He talks about life.

Then this huge chapter on exercise. Better get your sneakers on now – 

He writes at length and writes the difficulties of heat and exercise and the work around with that. How CF folks lose a lot of salt in their sweat and “since salt consists of sodium and chloride, they may lose enough sodium and chloride to lower the blood levels of these electrolytes.” He doesn’t give reason or discourage you – and sets you up with a plan.  

When he writes about death and life expectancy, he uses the stats but writes about the myths as well. “It has been stressed throughout this book how well people live with cystic fibrosis and how much better and longer their lives are now than they were just a few decades ago. Advances in treatment and the exciting research progress promise even bigger things to come.”

Bigger things to come!

Throughout this entire book Dr. Orenstein rewrites the negative with a steady stream of positively. I imagine he does this and had done this in his practice as well.

I thank him for this book. I really needed it at that time.

A tiny blip:

A five year old’s dream

When I was five years old, about to turn six, I got the idea that I wanted a barbell for my birthday. I had this picture in my mind and I believed in every bit of my body that I could lift this barbell above my head.  

I talked my mom and dad about getting me a barbell for my birthday. I swore to them I did not want anything else. My dad chuckled but he said, “If you really want it.”

We went to Sears and I picked out the barbell I wanted. He bought it and placed it in his truck – “You still really want it? It’s kind of heavy.”

I remember shaking my head, “Yes.”

We brought it home, and with all my determination I tried to lift it and I couldn’t. I am not even sure if I lifted about an inch. It was a 45 pound barbell.

I remember I kept staring at it, like I should be able to lift this weight.

My parents didn’t make fun of me or anything. I don’t even think my brother made too much of a fuss about it.

I decided that I needed to start a little smaller. I talked to my dad about possibly bringing it back to the store. He agreed and helped pack it up again.

We went back to Sears and returned the barbell, and in turn I got some smaller weights knowing in time I could do it.

I just needed to be a little bigger and stronger, and in time, I did. When I weighed more than the bar itself.

A bit silly. Kids believe in big thoughts no matter how big we actually are.

Break.

Things I have been thinking about –

Everything I write about, I do not believe for a half of a second that I have not gotten here by myself, nor has anyone. I am only human. We are all only human. Human with massive spirits, also with muscles, bones, and organs.

I believe collectively each of us have spirits that guide us; spirits that wish us well that protect us when we walk out our door or open the oven.

The spirits or guardian angels – whichever word you choose to use, move and around us all the time. It doesn’t truly matter if we choose to believe or acknowledge. They still wield their own power.

Being human means I need language, tools, machines, food, medication, and gravity to exist.

The guides need none of it. Collectively we do better together than otherwise.

And I thank them daily.

Keep moving, keept breathing, keep believing. Much love to you and to you and to you.

Resources:

Cystic Fibrosis A guide for patient and family – David M. Orenstein

Genetic mutations and their differences. I am would like to give some facts along the way.

There are five classes, and I am in class two. As my current doctor, Dr. Billings says in relation to how different cystic fibrosis patients do or perform, she says, “It’s a complicated condition.”

https://www.cff.org/What-is-CF/Genetics/Know-Your-CFTR-Mutations-Infographic.pdf